BC Dx and Hodgkin's Disease Radiation Treatment

Rabbit_B

Hi,

I can't get my daughter to join the site so I did.  She had Hodgkin's at age 16 (stage 2A) and only had Chemo.  She relapsed with stage 2A hodgkin's at age 21 and had to have chemo and radiation that time.  She is now age 27 and has BC.  Because of previous radiation she was ruled out for more and had a mastectomy on December 17th.  She has been told that if they don't eradicate things completely this time that if it came back again the next time she had cancer she would die because they couldn't continue to pump her full of the toxic drugs.  She has a moderate myocardial damage from former chemo treatments, and they are really concerned with her upcoming chemo because of it.  Her PETscan came back clear and during the mastectomy they tested 18 lymph nodes and removed a suspicious looking one...all OK.  Her port surgery is tomorrow and she starts chemo within a week. 

How often does this happen to those so young?  Has anyone else had so much at such a young age, and survived any significant time?  She has a baby and a toddler that really need her (duh...I guess ALL kids really need their mother, huh?) and I am wondering what their chances are for growing up with a mother.  I guess what I'm really looking for is some sign that there is a chance for her to kick this seemingly every 5 year cancer recurrence for good. 

mimi1964

missde3 - No I didn't have rads for Hodgkins, just the 8 rounds of chemo over 8 months.  I started it in Jan and finished it in Aug.  Declared in remission in Sept. 1981 and have been ever since for Hodgkins.

Renee

Round3

Hi all - I am new to this site and was so relieved to find a discussion board like this.  I am 37 and was diagnosed with BC at the end of September.  I had a double mastectomy in November and am halfway through chemo (3/6 rounds of TC).  I had Hodgkins twice when I was younger - the first time at age 19 I had a splenectomy and then radiation, and then at age 21 it came back and I had chemo (MOPP & ABVD). 

Rabbit_B - I know how scary this must be for you & your daughter. Having kids to worry about only makes things scarier (mine are age 6 &9).   Hang in there & stay positive!  

missde3

Rabbit_B:  Oh my gosh.  This is all so hard for all of us who have survived the first round of cancer only to relapse or get secondary cancers.  From what I understand, all lymphomas have a chance to recur.  If something sets off your immune system again, it can happen.  When I spoke to my rad onc last year about getting a breast lift with small implants for fullness, he said not to put anything foreign into my body that could trigger an immune response - so here I am now with BLM, and will be having the exchange surgery sometime this year with implants.  There are no good answers.  My son and I were lucky to have only needed one type of treatment and we were fine but we do know of a few people who had relapses.  I look at this from both sides since I am a HL survivor and a mother of a HL survivor.  I feel for you and for your daughter.  Keep the faith.  Hopefully this treatment will be the magic one.  Question: did she have IDC or DCIS or both?

Good luck!

Denise

NotAgainOnly27

Rabbit_B  I can relate to what your daughter is going through. I had Hodgkin's at age 12, was diagnosed with breast cancer at age 27 and was diagnosed with thyroid cancer at age 28 ( I just turned 29). It saddens my heart to hear how many of us are dealing with so much due to the treatment that saved our lives years ago. However it has been comforting to know I am not the only one going through this which is what I have felt like for a couple of years now. I would love the opportunity to speak with your daughter whether it by e-mail or phone.

EVERYBODY: I spoke with my oncologist who was very interested in the fact that there are so many of us out there with these same issues. I have decided I want to write a research paper about the issues that we all deal with whether it be physical or emotional. For those who would like to share their information with me so I can hopefully help the medical community understand what we have been through and are currently going through I would greatly appreciate it. I will not include any information that people have posted I will only include information that is sent to me. You can send me a private message through breastcancer.org or e-mail me at ClrBlndCA@aol.complease put the subject Hodgkin's & Breast Cancer. THANK-YOU TO ALL WHO ARE WILLING TO SHARE and help make a difference.

TennesseeMichele

NotAgain...I sent you my email address.  I like the fact that you're wanting to make a difference. 

I'm glad that your onc. was interested - my doctors weren't when I told them about "meeting" everyone here. 

But I'm thankful to be acquainted with all of you!

Michele

Hoolianama0508

 charua,

I hope you are recovering well since Feb 3rd bpm with reconstruction.

sflow

I am not young and did not have Hodgkins , but I did have radiation therapy as a child for a birthmark on my neck.  I developed breast cancer 3 yrs ago--stage1, grade 3, 0 positive nodes, ER+, PR+, HER2-.  There is absolutely no breast cancer or any other cancer history in my family and I have always wondered if there is a connection between those treatments and the BC.  I also have a large thyroid nodule and have it monitored by an endocrinologist--it is cystic in nature.

7timewinner

Wow, this thread is growing every time I pop in...new folks all the time. So sorry you are all here, but you are in the right place for support and understanding!

Rabbit_B: I am praying for your daughter, or sending good, healing thoughts, whichever makes you most comfortable.  Never give up hope. The clear PET scan and negative nodes are great news! I had 15 out of 17 positive nodes, and a very aggressive tumor, and one year later, I am still here. I am the mother of a 2 year old and a 4 year old, so I completely understand.I also have moderate valve damage from the radiation for my HD 26 years ago. Again, I am still here  

Your daughter can do this! If/when she is ready, we can support her through it. And you as well

Hugs and blessings,

Nadine

mimi1964

Wow indeed 5timewinner, this thread is definitely growing!  I haven't been on in awhile either because it seemed that no one much was posting.  But it definitely has become more actively recently. 

Rabbit_B  I too will be praying for you daughter and your family as you go through this situation.  I agree with Nadine, Never Give Up HOPE!!  Amazing things happen to amazing people.  Your daughter can do this and get through this!!  I feel in my heart she is an amazing woman... she already has a great start she has you on her side.  We will be here ready willing and able to lend support when she is ready.  Until then... We will offer comfort to you when you need it.  

Forever in my prayers,

Renee

missde3

Hey everyone!

Happy Valentine's Day to all. 

I wonder how all of this radiation effects males with their breasts?  Do they have the same risks?  I'm glad my son didn't have rads but the chemo has it's own demons. 

I'm getting my stress test next week to check out the valves.  Have had multiple US's on my neck for swollen lymph nodes.  So far, so good.  Swelling has gone down.  Have issues with my ears and was told by ENT to have cardio look at carotid due to rad damage.  Plus, I need a root canal!!!  I will be busy for the next couple of weeks with appts. 

Enjoy the weekend!

Payers and happy thoughts to all...<3

Doc247

Hello,

I am a 2x cancer survivor. I was diagnosed with Hodgkin's lymphoma when I was 19. The doctors can not tell me how I got it. No history of cancer on either side of the family. I had radiation therapy, and was then in remission for 17 years. I was told that I had a higher risk of getting BC, between the ages of 36 to 40. I was diagnosed with stage 3 BC the month before my 37th birthday. I have been in remission for about 8mths now. About 2 months ago I started having issues with wheezing and trouble breathing while sleeping and lying down. It started out about once a week. One night I started with it and also started with some chest pain. After 2 days, I called my family doctor, and she spoke with a Pulmonary doctor that she was referring me to. They told me to go to the ER to rule out Pulmonary Embolism. They have since said I have Restrictive Lung Disease and I am on Advair, an albuterol inhaler for my Asthma (which I never before had). They are telling me it is due to the extensive radiation I had 19 yrs ago. 

 Has anyone been diagnosed with this and if so, what have your doctors told you in regards to treatment and does it get worse?

Christine 

katonine

Hi Nadine, and everyone on this board,

I had Hodgkin's, stage IIB, fifteen years ago when I was 25 years of age. Had mantle radiation treatment, no chemo.

I was recently diagnosed with DCIS, at age 40. I was told by my oncologist that it is the result of radiation treatment for Hodgkin's. I had two lumpectomies, and the DCIS was removed. It was small, and seemingly contained. It is ER+ but I am not too keen on taking tamoxifen. Due to my history of radiation treatment, my oncologist is recommending a bilateral mastectomy. I did some research and learned that my risk of recurrence is anywhere between 25% to 50% in the next 15 years.

Does anyone else know what the risk of recurrence is for DCIS in Hodgkin's survivors? I live in Canada, and I was wondering if the treatment advice (mastectomies) would be the same in the US. 

I was relieved to discover this message board - I am really curious if anyone else out there is in a similar situation, DCIS after Hodgkin's treatment??

I decided to do the mastectomies because of the high risk of recurrence. Although I am still uncertain that it is necessary - any advice? Also, has anyone had implant reconstruction after radiation treatment in the past for Hodgkin's? Was wondering what the success rates are of such reconstruction. I am scheduled for reconstructive surgery, at the same time as the mastectomies, but I heard that it sometimes doesn't work on women who had mantle radiation in the past.

Thank you to anyone who replies, and thanks to everyone for posting your info.

Would love to hear from women with similar stories, facing such decisions, and any advice or info is welcome. Thank you.

missde3

katonine:  welcome but sorry we're all on this thread...i had BLM last year.  one breast had 2 spots of DCIS.  no lumpectomy because i was told no more rads.  they wouldn't do a lumpectomy w/o some follow-up.  i opted for the BLM because of the risk.  i was told that it wasn't a matter of 'if' but when it would show up in the other breast.  i, too, had rads only with the HL.  if i wouldn't have had the BLM, i would have had an MRI every 6 months and mammos in between in the other breast.  couldn't live like that.  i was also told that rads WITH IMPLANTS ALREADY IN were bad but not afterward.  each person is different.  i was also told the skin could be problematic with stretching with tissue expanders but mine did ok.  still waiting for the recon.  need a PS in NY who has the 'gummy bears'  but i don't know of any recommendations yet.  keep asking questions.  write them down.  good luck!!!  we are in our own unique group.

katonine

Hi Missde3,

Thanks so much for your reply and for your info. (Also, I love your cat pic!) 

Yes, I know what you mean about the follow-up. my last MRI showed possible DCIS recurrence and i can't stand the worry. 

did you have IDC after the BLM?

i hope you can get the recon. thank you again for sharing your story, and your advice.

katonine

Hi Fellow Hodgkin's survivors with breast cancer,

i am now in this group. was recently diagnosed with DCIS, had mantle radiation for Hodgkin's 15 years ago when i was 24. I am opting for BLM due to high risk of recurrence. anyone out there who can give me some advice on how to prepare for BLM with reconstruction? or what to expect??

i am getting expanders put in on the same day as the BLMs, then implants few months later. was wondering how hard the process is,..and any success stories? My Plastic Surgeon told me the implants might not work due to scar tissue from Hodgkin's radiation. and I am not a candidate for the DIEP flap recon.

 any advice or info would be most helpful. thanks!

i have read some of your posts and i really pray that all of you are doing okay - you are all a very special group of incredibly strong women! 

Pamelajo

I'm astonished. 

After reading and catching up, I've discovered I am not alone in the rapid heartbeat, low blood pressure, degenerative joint disease, headaches....  can I add to the list?  Excessive fatigue (which has gotten worse since ending BC treatment), food gets stuck in my esophagus from what I can only assume is scar tissue, bad teeth from radiation.......  fingernails/toenails coming loose from the nailbeds.

I took ABVD chemotherapy with sandwich radiation x 60. 

Jen2

Katonine    

I am going through the reconstruction stage. I had BLM in May with expanders put in. They did the fill ins every 3 weeks right before a chemo treatment. Due to the radiation they just took it slow. He did not want to stretch my skin too fast. Instead of 100cc for 3 fill ins they did 50cc for 6 fill ins.I had the transfer surgery in November to put in the implants. It was an immediate relief from the expanders. I just had an unplanned surgery for a revision. I am now waitng to do nipple reconstruction in 2 months. I have not been on in a while but I had Hodgekins disease at 19 with mantle rad. Diagnosed BC this past April at 39. I chose to do the BLM because of the high risk. I  also started Tamoxifen in Oct. I was ER+. Hope everyone is doing well!

mimi1964

Hey Ladies... Wow!!! it's been a while and I can't believe the number of you that have breast cancer as the result of mantle radiation you took for HD years ago.  I didn't have radiation for HD I only had chemo but I still got breast cancer.  I have asked my Oncs and breast surgeon they have all said my HD didn't have anything to do with it.  At least that's what I was told... I still believe differently.  Good luck to those of you trying to do reconstruction. 

Renee

7timewinner

Katonine,

I had mantle rads for Hodgkin's Disease and was diagnosed with IDC 25 years later. I had a lumpectomy, chemo, and radiation to the affected breast.

Neither my medical nor radiation oncologists ever said to me that I MUST have a mastectomy because of the previous radiation for HD. I was given the option of a lumpectomy or a mastectomy. I chose the lumpectomy and am happy with the aesthetic results. My tumor was located closer to the surface and was small, so removing the tumor did not cause a great deal of visible change. I also had lots of lymph nodes removed, many of which were cancerous. My armpit area is the area that looks most different to me as so much tissue was removed, and I am not a very big person to begin with.

It's probably a case-by-case decision regarding lumpectomy versus mastectomy with previous radiation for HD. 

Whatever route you take will be the best decision for you. All the decisions we are faced with when diagnosed with BC can be so overwhelming. Stay here with us, find other boards on this site, we are all here to support you with oodles of experience

Christine,

Restrictive Lung Disease is something I have never heard of until you wrote it here. Did you have more rads for BC? Chemo?  Radiation can definitely cause some late effects, as we all know! SO sorry you are dealing with that on top of the BC.

I hope everyone is feeling as well as can be expected today with whatever health issues you are facing. Yesterday, I jogged a 14 minute mile, slow but steady. I am rehabbing my body after a long year of treatments for BC. I use a spin bike and lift weights as well throughout the week, all in a slow and careful manner so that my body has time to catch up. But I do all of this now because despite all my body has been through with HD and BC, thyroid issues, etc, I am not ready to give up taking care of it! Today I am here, and feeling blessed

Peace and healing to all,

Nadine

TennesseeMichele

Nadine, is this a new picture and quote?  Hadn't noticed them before, and really like them.   I'm glad to hear somebody else takes exercising a bit slower, too, not just me.

missde3

katonine:  sorry for the confusion - had 3 microinvasions of IDC with the original DCIS.  no further treatment for me.  i still need a PS who has access to the gummies!  the TE's cause pain on my sides. 

i'm looking into a few PS's that MY PS recommended.  he said i shouldn't have to live with pain.  so, wish me luck and happy spring!

7timewinner

Hi, Michelle!

That "new" pic is actually from a couple months ago, I think...much more hair now I need to update!

As for the quote...relatively new.  I recall early on coming to these boards and spending far too much time looking at other people's diagnoses and comparing them to my own, and how much of my energy that took away. When the women here read my messages, I just want them to focus on the light at the end of the tunnel, not the fear. We can do this.

Exercise is still slow, and I am OK with that. It will take time to rebuild my body. And I am feeling blessed to have that opportunity at all

Peace to all,

Nadine

7timewinner

A little quiet around this thread....everyone doing alright these days?

Check in when you can and let us all know how you're doing

Peace,

Nadine

Kiki1965

@5timewinner

Thank you for you encouragement.  I did have 2 of 25 positive nodes.  It has been worrying me - especially as I approach the end of treatment.   I can nearly convince myself that it was spread and the docs missed it.

 Perhaps it is because my first doc DID miss it - I have lobular and she told me it didn't 'feel' like breast cancer.  Coupled with the description of lobular as 'sneaky'.  

 Your words and experience have helped me relax a bit.

7timewinner

Kiki1965:

I completely understand your concern regarding the nodes, and how nearing the end of treatment leaves you wondering, "what now"? and worrying about recurrence. That's all very typical feelings for the stage of treatment you are curently in.

I had MANY more positive nodes than you did, and I am still here to talk about it Please, please don't get wrapped up in the numbers. YOU are NOT a number!

As you end treatment, now is a great time to discuss your follow-up plan with your oncologist. Knowing how you will be monitored may give you some peace of mind right now.

Thanks so much for checking in! Keep posting and tell us how you are doing. 

Hugs,

Nadine

missde3

i found a new ps!  saw him last week.  "you are a complicated case.  i have a few concerns".  apparently all my doctors say the same thing to me!  surgery is set for nov 23rd but at least i can get the 'gummies'.  my friend used him and her foobie looks beautiful so we're going with him.  he wasn't on my insurance last year but now he is.  yay for me!  otherwise, all tests, doc visits went well.  my 1 year anniversary was may 6th.  the doc visits have slowed down a lot.  more time for me!  how is everyone??  hi, nadine.  glad you're doing well. 

taranebraska

Hi all,

I posted a few times last year.  I was so frustrated at the lack of concern from my local doctors regarding the complexity of my case (due to HD at age 33 and DCIS at 45), I took off to Chicago to the Cancer Treatment Centers of America.  Had the lumpectomy there on Aug. 28 - which, in hind sight, wasn't the brightest idea but at the time, no one in my home town had earned my trust. 

I just had my follow-up mammogram (it's 10 months post surgery) and there are new "calcifications".  I had originally posted last week that I didn't have a local doctor here to follow up with, but I managed to get in to another surgeon here that has a good reputation.

I need to find my records from last year and re-orient myself to the BC world.  I'm pretty sure I tested positive for my DCIS to be responsive to hormones, is that the HER+ everyone lists?

Needless to tell you all how mad and upset I am at my new mammogram.  I will meet with the surgeon next Friday, and I'm assuming the discussion will be mastectomy.  I will re-read many of the threads here on that, but I wanted to check in with you all.

taranebraska

I'm scheduled for BMX Aug. 10.  I am planning on doing a follow-up visit with a regular oncologist, as I really want to examine the extent of radiation I had for Hodgkins, and what exactly I need to be paying attention to and watching besides BC.

Are any of you seeing a doctor where that is one thing you discuss frequently?  I've appreciated hearing about the variety of other physical problems some of you are facing.  How do we know we're having everything checked we need to?

This list is pretty quiet this summer, but I'm hoping we can get another conversation started.  How is everyone?

missde3

taranebraska: i'm having my exchange surgery tomorrow (moved up from nov) so we'll both be having breast work.  there are so many other things besides bc that can happen - muscle atrophy, shoulder-back-neck probs, esophageal cancer, stomach cancer, lung cancer, heart problems, skin cancer, etc.  not everyong will get everything but i have had so many medical issues.  will find time after the surgery to explain.  good luck with your BMX.  i had it last year.  not a picnic.  i miss my breasts terribly but i feel peace in my heart about the decision.  are you having reconstruction at the same time, none or tissue expanders for future reconstruction?  are you the one who didn't feel that DCIS was cancer?  good luck with it all.